Tuesday, May 27, 2014

PWS Awareness Day 27: Predicting the Future

Oscar was late for every gross motor milestone. Late to roll over. Late
to sit up. Late to walk. And every interaction with a
typical baby was a reminder of just how behind he was. I remember laying him down on a blanket at the park next to my friends' babies, ones that were born months later. His arms and legs lay still at his sides while those babies kicked and rolled effortlessly.

Early on I perseverated (yes I perseverate too!) about Oscar's gross motor skills. They were one of few tangible measures of how he was doing, and I wondered if his delay in rolling over, in walking, would predict how severely affected he would be in other areas as well. I peppered his physical therapist, the geneticist, the endocrinologist, every parent I met, about whether his significantly low tone meant he would be more cognitively challenged, more likely to food seek at an earlier age, have more severe tantrums.

I wish I could remember who it was that helped me understand that PWS was a syndrome comprised of distinct characteristics, and that the degree to which Oscar was affected in one area was in no way predictive of future struggles or successes in another. For a mom desperately trying to figure out what the future held this was both reassuring and frustrating. I was glad Oscar's muscle tone couldn't be definitively linked to a lower IQ, but I also really wanted to know what his life, our lives, would be like.

Oscar did eventually sit up:

and ride a bike:

And eventually I gave up on trying to guess how impacted he would be by other aspects of the syndrome as he got older. Eventually I learned to live a little more in the present.

About Me

I'm the mother of three, a writer and a medical and educational advocate for my middle son who was diagnosed at birth with Prader-Willi syndrome. I write about raising a child with special needs and his two so-called typical siblings in between soccer games and crew races and all those darn medical appointments.

About My Kiddos

Abe (15): Athletic, thoughtful and shy. Skillfully motivates and teaches his siblings everything from fractions to board games to goal-tending. After a "lifetime" of playing baseball he switched to rowing this past fall and is loving the intensity and challenge. He still watches baseball and umps baseball games, but instead of swinging phantom baseball bats in the living room during homework breaks he's pulling an invisible oar.

Oscar (13): Endearingly earnest and hardworking. Loves pop music and the Oakland A's....and saves every penny so he can someday "buy a zoo and live in a big house with his wife, children and five golden retrievers". Lives well with Prader-Willi syndrome and it's accompanying insatiable appetite, low tone, scoliosis, sensory integration issues, slow processing, learning disabilities, behavior challenges, and fatigue.

Ruby (9): Independent, athletic, and bright. Spends her free time reading, creating structures out of everything from cardboard to legos, playing board games and kicking her soccer ball in the house. Can entertain a car-full of high school rowers with her charm and jokes.